Struggling with Chronic Pain and Lack of Medical Guidance

I’m trying so hard to stay positive and do the minimum of what I need to while I keep searching for answers about my body - especially concerning getting my work done. I have an appointment with someone specializing in POTS and EDS (among other things) this week, and I’m planning to try to schedule with a rheumatologist. Those are things I keep trying to tell myself again and again. But I am struggling so much. I’m in severe, ongoing pain and I’m sleeping so badly. As a result, I’m struggling so hard to just exist. I’ve hardly been able to work all week (which is far from the amount I’m supposed to be doing). Between the pain and my absolute lack of energy, I truly cannot focus. I feel terrified, exhausted, and like I don’t have someone to guide me medically (because my PCP has been so little help in figuring things out).

Your answer

MeeB333

1y ago

Sorry to hear that you are going through this, but you are definitely not alone. I am constantly in pain & have been unable to work for years…It’s a struggle just to semi- function-ish on a daily basis & I am always beyond exhausted. My former PCP, who I actually loved because she has Lyme too and is open to alternative treatments, was promoted, & I’m going to the new PCP she recommended soon, but it’s frustrating, as I have to explain all of my issues to a new doc & hope that she can help me. As a longterm chronic pain, exhaustion & illness sufferer, I can tell you that the best thing you can do for yourself is to be persistent & be your own patient advocate. If your PCP is not helping, find one that will. We all deserve to find the right practitioner who will listen to us & help us seek out proper diagnoses & (hopefully) effective treatments. What kind of specialist are you seeing for POTS & EDS?? I may have POTS, or some other circulatory condition, so I’m going to inquire about seeing cardiologist to look into this, & my former PCP confirmed I’m probably right to assume that I was born with EDS, but I have not been able to figure out what kind of doctor I need to go to & how I can get the diagnosis officially…? Anyhow, I hope that you find the answers you seek and receive the help that you deserve. :-) Best of luck!!! 🤗

catdad22

1y ago

thank you for all of the empathy in your comment 💜 I really needed it at that moment. Also, your original PCP sounds awesome. We need so many more docs increased empathy at minimum, and with chronic conditions to disabilities whenever possible. The person I went to just had an MD with a specialization in naturopathic medicine. Part of what sold me on going to her is that she is autistic and has EDS. From what I’ve found online, MD’s ~can~ diagnose EDS, but it’s more common for geneticists, rheumatologists, and sometimes cardiologists are likelier to do it.

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